When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.

Wednesday, November 30, 2011

Well, Hmmm....Here are the Updates...For What They're Worth

I can't believe how long it's been since I've posted. I'm ashamed really. Things have been crazy busy, and the holiday season just means they're going to get crazier. On top of that, we learned that my husband's company is dissolving his department and there will be no openings elsewhere. Anyone have use for a good chemical engineer with emphasis on metrology, quality assurance, and statistics? Let me know.

Okay, so what you really want to know about. The boys have had their cochlear implants. There is good news, and as always a little bit of bad news. Let's start with the good news. CJ's implant is working very well. It will require some more tweaking, but it does work and he will hear okay with it. He tolerated the surgery well, healed well, and is eager to get back to his routine again. I'm eager to get him back to routine, too.

And then there's Liam. His surgery went well and he recovered quickly...too quickly in my opinion. We took him Monday to activate it and that's where the bad news came in. He can hear with it, but he can't control his head or body when it's on. An X-ray was performed followed by a CT scan today and both confirmed what the doctor feared had happened.

Liam's internal anatomy is very unusual. Highly unusual. Extremely unusual. (Are you getting the idea?) There is no bone between the bottom of his cochleas and his auditory canal, and a portion of the implant has landed in the auditory canal. CJ has the same anatomy, but by some miracle, he hasn't had this same problem.

The doctor is going to have to remove the implant and try to re-insert it so that it goes into the cochlea rather than the auditory canal. With the spinal fluid gusher that Liam has (caused because there is no bone to control the fluid), there is no way to see what is happening in there. There is also no way to know for sure that the implant has gone in the intended direction. It's possible that the doctor will have to push it in as far as he knows for sure that he can and leave the rest out. That leads to other issues like not having enough electrodes in the cochlea, but we can work around those issues.

The whole situation is very complicated, and admittedly a little bit scary, but it WILL be resolved. This is a very rare (never really seen) situation, so I guess I can be excited that Liam gets to be some sort of pioneer. I swear I should just call TLC and get my own tv show.

Anyway, those are the major updates for now. Liam's IEP is coming up, so I'll also have lots of information about that. Oh! And I promise to be MUCH better about posting more regularly.